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Author Topic: OKay Folks decision time.  (Read 4274 times)
kitkatz
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« on: September 27, 2008, 08:55:01 PM »

My husband and I are talking about home dialysis with Nx-stage. We have come up against these things as we talk about it.

Hubby is afraid he will hurt me trying to stick me.
I do not know if I can let him stick me and not cringe or scare him.
He does not want to have to stay home and not go on his trips because I need him here.
He says it is a lot of responsibility we are placing on ourselves doing it at home.
He is not sure about the whole thing being at home.
He will not even walk into the hemo dialysis center to get me or see me very often, he does not really want it at home.
Davita is being difficult with me learning how to stick myself in center.
I feel so much better on nocturnal I am worried NX stage would be a set back.
 
So it looks like I am going to have to take a pass on the home dialysis for now and stay with the nocturnal.
When a nocturnal center comes open nearer to home I will move there.



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Take it one day, one hour, one minute, one second at a time.

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G-Ma
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« Reply #1 on: September 27, 2008, 09:12:51 PM »

My honey was against NxStage when I started suggesting it as he was so afraid of an infection..but as the time goes by he is asking more and more questions, has not seen me or the machine since I started NxStage but I know he will insist on being the one to note all the info on the flow sheeet and learn how to watch everything.  He used to come in center to visit me the last hour and knew all the nurses and learned what to watch for on those machines. Now he asks daily how dialysis went and if I found my vein etc...kind of funny how it grows on you.
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Lost vision due to retinopathy 12/2005, 30 Laser Surg 2006
ESRD diagnosed 12/2006
03/2007 Fantastic Eye Surgeon in ND got my sight back and implanted lenses in both eyes, great distance & low reading.
Gortex 4/07.  Started dialysis in ND 5/4/2007
Gortex clotted off Thanksgiving Week of 2007, was unclotted and promptly clotted off 1/2 hour later so Permacath Rt chest.
3/2008 move to NC to be close to children.
2 Step fistula, 05/08-elevated 06/08, using mid August.
Aug 5, 08, trained NxStage and Home on 9/3/2008.
Fistulagram 09/2008. In hospital 10/30/08, Bowel Obstruction.
Back to RAI-Latrobe In Center. No home hemo at this time.
GOD IS GOOD
Maggie and Jeff
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« Reply #2 on: September 27, 2008, 09:43:28 PM »

My husband and I are talking about home dialysis with Nx-stage. We have come up against these things as we talk about it.

It is a good thing you can talk to you husband about this I think it shows he cares.
Hubby is afraid he will hurt me trying to stick me.
Well, He probably will, I hurt Maggie every time I stick her (just because the needles hurt) but I know that I don't hurt her fistula any where near as much as someone who sticks for a living and not out of love.  Some days are hard most are not.  
I do not know if I can let him stick me and not cringe or scare him.
You probably won't be able to "not cringe" or cuss from time to time yesterday Maggie  said she was going to rip my balls off!! She got over it though and we got through it in one piece.
Maggie says Take an anxiety pill and look out the window the first time.  
They will train you both at the HHD training center and you will not go home until you are ready.
He does not want to have to stay home and not go on his trips because I need him here.
Hey, Now you can go with him just pack the machine and off you go we travel about 20 weekend per year and we go camping.
He says it is a lot of responsibility we are placing on ourselves doing it at home.
You are ESRD, staying alive is a lot of responsibility.
He is not sure about the whole thing being at home.
My doc told us when you are at home you run dialysis it doesn't run you. Being at home is more convenient and time saving not to mention GAS.
He will not even walk into the hemo dialysis center to get me or see me very often, he does not really want it at home.
:Kit n Stik; He will like it when he sees how much healthier you are at home not to mention happier.
Davita is being difficult with me learning how to stick myself in center.

A good reason to start taking control of your dialysis at home.  At our center they encourage self canalization
I feel so much better on nocturnal I am worried NX stage would be a set back.

We are looking to start nocturnal so not much to say there but we dialize daily and we love the portability and adaptably of the NxStage Suggest you don't dismiss it give it a try you can always go back to in center nocturnal.  NxStage will be out of trail stage for home nocturnal Dec 2009
So it looks like I am going to have to take a pass on the home dialysis for now and stay with the nocturnal.

If you don't try you'll never know if you would like it better or not.




« Last Edit: September 27, 2008, 10:09:52 PM by Maggie and Jeff » Logged

The LORD is my light and my salvation--so why should I be afraid? The LORD is my fortress, protecting me from danger, so why should I tremble?

Jeff is the needle pusher Maggie is the pincushion.
okarol
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« Reply #3 on: September 27, 2008, 10:20:27 PM »

Victor could probably do a better job with needles than a tech! Or stick yourself.

You wouldn't have to be out at 4 am or whenever it is that he picks you up from nocturnal.

I can picture you at home, with Victor and your pets, not having to go out for treatment.

You could do the training and see if it feels like something you'd like to do.


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Wattle
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« Reply #4 on: September 28, 2008, 01:40:29 AM »

Kit,

I agree with Okarol. Why not do the training and see if it works for the both of you. Self cannulation seems to be the way to go (not that I would know!). My husband would pass out if he was the one to stick me. If he watches me get a blood test he goes pale and the nurses make him sit down and get him a drink and a biscut!        >:(       Victor may take a while to warm to the idea.

Just because you do the training shouldn't mean you are locked into going home. Maybe it's worth a try?    :cuddle;
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G-Ma
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« Reply #5 on: September 28, 2008, 01:44:16 AM »

 :rofl;   Hey Wattle...I just thought of something as I read your post...do you suppose our men pass out at the sight of our blood/needles etc so they can get a drink and bisquit?  hmmmm.....could be.
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Lost vision due to retinopathy 12/2005, 30 Laser Surg 2006
ESRD diagnosed 12/2006
03/2007 Fantastic Eye Surgeon in ND got my sight back and implanted lenses in both eyes, great distance & low reading.
Gortex 4/07.  Started dialysis in ND 5/4/2007
Gortex clotted off Thanksgiving Week of 2007, was unclotted and promptly clotted off 1/2 hour later so Permacath Rt chest.
3/2008 move to NC to be close to children.
2 Step fistula, 05/08-elevated 06/08, using mid August.
Aug 5, 08, trained NxStage and Home on 9/3/2008.
Fistulagram 09/2008. In hospital 10/30/08, Bowel Obstruction.
Back to RAI-Latrobe In Center. No home hemo at this time.
GOD IS GOOD
lola
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« Reply #6 on: September 28, 2008, 07:06:42 AM »

Kit all of the fears you guys have Otto and I had also. Once your buttonholes are good Otto says there is NO pain. Otto sticks himself and thought he would NEVER be able to do that. Otto does alot of days alone because I have had to go back to work. There are still so many "what if's" but know that Otto is on Nxstage he truly is feeling better. I'm not gonna lie there are days Otto HATES doing everything himself but he likes not feeling like :puke; anymore.
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Rerun
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« Reply #7 on: September 28, 2008, 09:15:30 AM »

Best of luck whatever you decide.   :cuddle;
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Wallyz
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« Reply #8 on: September 28, 2008, 09:42:00 AM »

If you cannot do Nocturnal Hemo at home, I would stick with Nocturnal in Center.  There are so many benefits to doing it slow and extended. Dialysis, I mean.
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petey
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« Reply #9 on: September 28, 2008, 11:39:50 AM »


Hubby is afraid he will hurt me trying to stick me.
I do not know if I can let him stick me and not cringe or scare him.


Kit -- this was my biggest fear -- that I would hurt Marvin while cannulating him!  Does it hurt?  Yes, he says the initial needle stick (even blunts) still is painful.  I absolutely hate this part of it (not doing the actual sticking, but knowing that I'm the one holding the needle that is inflicting pain to him -- does that make sense at all?).  Also, when I'm cannulating and touch that nerve that Marvin declares runs right across the top of his fistula, he cringes -- and then I want to stop and say, "I can't do this to you."  But, somehow, I find the courage to go forward with it.  The way I see it, the benefits are well worth the pain (even if it's minimal) that is also involved.  But, still, I hate to be the one on the other end of that needle.  (Don't ask if Marvin can learn to cannulate himself.  No.  He can't even look even after all these years.)

Before we started home hemo, I had never even touched a needle.  I had no medical training or experience from which to draw.  I was as green as green can be.  You do get better at it with time (even though it never gets "easier" -- just easier to do).

I think (my opinion here) that home hemo is a partnership.  It has to work for both of you.  I'll be thinking about you.
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paris
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« Reply #10 on: September 28, 2008, 01:15:20 PM »

Kit, you have been at all of this for a long time.  It seems like nocturnal has helped and made a difference.  You and Victor will figure this out and know what is the best for your lives.  My husband would be the same way.  He couldn't stand it when the kids got sick, had stitches, surgery, etc.  I couldn't ask him to do something he wasn't comfortable with. (although I know he would try anything to help).   Hang in there.     :grouphug;
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melissahumm
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« Reply #11 on: October 26, 2008, 04:29:41 PM »

Well I think your husbands concerns and fears are valid.  The benefits of home dialysis are obvious,but I think that the negatives aren't explained to well.  No matter what anyone says,you are bringing this into your home.  There is no escape from it.  The supplies and machine etc are a constant reminder.  Your husband should not have to stick you.  The home hemo training trains you to do all that.  In fact you can do it all yourself,with his role being only as needed.  My son does it all himself,I do help him with the labs and if he needs me to.  I have never had to stick him,so I think your husband could be off the hook.  But you do have to take his feelings into account.  Would he become so freaked out that your marriage could suffer.  I mean,you really have to look at everything.  I have a really good friend who is a dialysis RN.  If she had her way,she would have my son doing nocturnal.  She says it is better for your body than any other.  My son won't do it at a center,but if NX Stage comes out with it,I think he would do it.  I think that you have to look at all the aspects of this.  Make a decision that works for your health and family.  Good Luck
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